A new review by Pieper et al 2013 aims to provide a comprehensive overview of the research on treatments for both pain and challenging behaviour in people with dementia.

It hinges around the fact that pain is commonly undertreated because it is not easy to recognise unless there is a diagnosed physical cause, and also because dementia sufferers may have great difficulty communicating their pain verbally.

Behavioural signs such as grimacing, guarding, resistance to care, pacing/rocking etc will give clues to the fact that a person with dementia is in pain, but these symptoms can be confused with other common neuropsychiatric symptoms of dementia such as aggression or agitation.

The causes of these behavioural symptoms are different and should be treated appropriately. However, their strong correlation means challenging behaviour irrespective of its cause is often over-treated, frequently with antipsychotic medication which has serious side effects and a harmful impact on quality of life.

Grimacing, guarding, resistance to care, pacing and rocking may point to the fact that a person with dementia is in pain

By contrast, pain which may be the main cause of challenging behaviour is often undertreated although pain medication is less harmful to this vulnerable population.

Methods

The researchers systematically searched the literature for published studies only. The studies were included in the review if:

The participants had a diagnosis of dementia: including Alzheimer Disease dementia, vascular dementia, Lewy body disease or frontotemporal dementia

The main thing that struck me when I looked more closely at the characteristics of the included studies was that there were none on antipsychotics; an all too common behavioural intervention. So logically, this means that no studies on antipsychotics for challenging behaviour measured pain as an outcome. On further examination of the Cochrane Dementia Group’s open access register of controlled dementia trials, known as ALOIS, trials on antipsychotics for behaviour also rarely reported any other quality of life outcomes. I find that pretty shocking.

The reviewers did not look for unpublished studies, so this review may suffer from publication bias

The quality of all 16 studies was assessed using the recently developed but positively evaluated Mixed Methods Appraisal Tool (MMAT), which rated the studies on whether they met four quality criteria on quantitative and qualitative aspects of the study methods. Only one trial met all four criteria for “quantitative randomised” and only one study met all four criteria for “quantitative non-randomized”. No relevant mixed-methods or qualitative studies were identified.

Only published studies were included. No attempt was made by the researchers to access the results of completed but unpublished trials by searching trials registers such as http://clinicaltrials.gov/. This means the results of the review may have been affected by publication bias.

Conclusions

From looking at the relatively small number of 16 trials the researchers said that the evidence suggests that

They acknowledged in the discussion that the review’s conclusion should be interpreted with caution as the quality of the studies was moderate and there were big differences between the studies in methodology, interventions and outcome measures used.

My own view

Until the urgently needed research can be done to try and understand the complex relationship between pain and behaviour in dementia better, it’s clear that better pain assessment and management has got to be an integral part of strategies to manage challenging behaviour.

Right now, what’s stopping the dementia research community and patient advocates raising awareness of this important issue? Guidance should be provided immediately to professional and informal caregivers to help stop the unnecessary suffering caused by the under-detection and under-treatment of pain in people with dementia.

Caroline is currently Education and Training Manager for the EQUATOR Network, an international organization dedicated to enhancing the quality and transparency of healthcare research. Her previous roles have included Training Coordinator for The Cochrane Collaboration, and manager of an NHS-funded public engagement project for the Cochrane Dementia and Cognitive Improvement Group, The ALOIS Community Project (www.alois.cochrane.org). The engagement project involved developing eLearning materials to explain the principles of research and evidence synthesis with the aim of encouraging public understanding and involvement in health research.